Diagnosed with AL Amyloidosis. What can I expect?

Posted by jenrico @jenrico, Mar 13, 2016

Diagnosed with AL Amyloidosis. Would like to hear from someone about what to expect. Have not started treatment yet.

@rosemarya

luckyme54216 @luckyme54216, I want to welcome you to Connect. I can understand why you have so many questions about your diagnosis. I am also happy to hear that your doctor has referred you to someone who might be able to provide a second opinion. I don't know anything about AL Amyloidosis. I did locate this information from Mayo Clinic that provides a good description of the diagnosis and treatment for this rare condition. I also read that Amyloidosis is often overlooked. And that Mayo Clinic has doctors who specialize in diagnosing and treating protein disorders of the blood, such as amyloidosis. This could be an option for another opinion for you.
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178

What kind of symptoms are you experiencing? When is your appointment?

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The ONLY symptom I had that brought me to a doctor was that I had the skin lesion. I don’t know if any of my other symptoms are for sure related to AL Amyloidosis because I’ve had them for so long and this is a new diagnosis. But I’ve had protein in my urine for a while but it’s getting higher. And I’m not sure if this is related, but one of my kidneys has shown up atrophied on an MRI of my lumbar spine. I had them checked out after that and the atrophied kidney is functioning. I just can’t remember if it was at 100%. I’m thinking it was fine since I didn’t get any treatment. This has been 2 years ago. I was diagnosed with AL Amyloidosis less than a month ago.

Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

Liked by gingerw

@kanaazpereira

Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

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@kanaazpereira Thank you for asking me to join in. I was diagnosed with a very rare kidney disease in March 2015. In 1988 I was diagnosed with systemic lupus and had been producing abnormal amounts of protein since then. My doctors had been chalking up the problems with protein levels as a result of the lupus. Finally in 2014 my nephrologist thought there was something different, and needed further investigation. As they did the testing and eliminated possible situations, everything was sent to both Cedar-Sinai Hospital in Los Angeles and Keck USC School of Medicine. The renal pathologist there was hoping that it was not amyloidosis. Instead my disease is called Type 3 Collagenofibrotic Glomerulopathy. There have been less than 50 cases in the world diagnosed and I am the only one in the United States that they are aware of at this time with this condition. Unfortunately I do not have any information I can give you on amyloidosis.
Ginger

@kanaazpereira

Hello @bob100,

I’m truly sorry to hear about your wife’s diagnosis, but I also quickly want to say that this is exactly what Mayo Clinic Connect is about – having a chronic or rare condition sucks, but you don’t have to go through it alone. Connect is a place to get and give support, and find hope in the experiences of other people. I’m confident that @luckyme54216 and others in this discussion will join in soon.

I’d also like to introduce you to @devineone and @gingerw who’ve shared their insights in this discussion: https://connect.mayoclinic.org/discussion/al-amyloidosis/

Your wife and you must have felt so frustrated when you realized your doctor missed the diagnosis! Aside from dialysis, how is she managing the symptoms?

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Sorry for the delay, didn’t see your response until now. She is doing pretty darn good considering. She has had a kidney biopsy and a bone marrow biopsy and we have an appointment on the 7th to hear where she is at and to what degree the AL is has spread. We also have an appointment with the cardiologist this week to find out how much involvement in the heart. She is scared but wants the cards on the table so we can move forward with treatment. I want too say that this site has been invaluable for me and am thankful for what you all do.

@colleenyoung

Hi @jenrico, Welcome to Connect.
We hosted a webinar last June called “Amyloidosis – What Patients Need to Know” https://connect.mayoclinic.org/discussion/amyloidosis-what-patients-need-to-know. In this webinar Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provided an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms.

I’d like to introduce you to @gaetanche @mvpdda and @tmousetis who also have AL amyloidosis. Hopefully they will join this discussion thread and share their experiences about treatment and managing symptoms.

In the meantime, can you tell us a bit more about yourself. What, if any, symptoms are you experiencing? What led to your being diagnosed?

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Hi Colleen, the link you sent does not open for some reason. Could you confirm the link and resend.

Thanks

@bob100

Hi Colleen, the link you sent does not open for some reason. Could you confirm the link and resend.

Thanks

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@bob100, I am going to tag @colleenyoung so that she will get a noticication that you were speaking to her.
I hope that you and your wife are learning more about her condition and treatment options as you proceed through thre testing.

@rosemarya

@bob100, I am going to tag @colleenyoung so that she will get a noticication that you were speaking to her.
I hope that you and your wife are learning more about her condition and treatment options as you proceed through thre testing.

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Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused

@luckyme54216

The ONLY symptom I had that brought me to a doctor was that I had the skin lesion. I don’t know if any of my other symptoms are for sure related to AL Amyloidosis because I’ve had them for so long and this is a new diagnosis. But I’ve had protein in my urine for a while but it’s getting higher. And I’m not sure if this is related, but one of my kidneys has shown up atrophied on an MRI of my lumbar spine. I had them checked out after that and the atrophied kidney is functioning. I just can’t remember if it was at 100%. I’m thinking it was fine since I didn’t get any treatment. This has been 2 years ago. I was diagnosed with AL Amyloidosis less than a month ago.

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@luckyme54216, I would like to drop in on you and ask if you have been able to get your appointment with a specialist in Green Bay.

I do not have any experience with what you are going through, however, I am familiar with the stress and fear and uncertainty. For myself, I actually found a tiny bit of relief when my condition had a name. I remember when the hepatologist told me that he had 'good news and bad news' for me. (good news-diagnosis: bad news-PSC(progressive liver disease)

Recently, @bob100 has shared some of his experience about educating himself about AL and its effect on the body and organs.

luckyme54216, How are you feeling? And have you learned any more about your condition?

@bob100

Thank you. I have been educating myself daily on AL and its affect on the body and organs. I like to use an open feather pillow in a small room with a fan on to demonstrate what happens with the amyloid. The feathers rise and deposit over every surface eventually plugging up everything they fall on. Amyloid in its self is not harmful like a cancer cell because it does not cling together and form cancerous tumors. Rather, it deposits on and in various organs in the body. Thus, if caught soon enough can be stopped and in time slowly removed from those same organs. Sherry was diagnosed with AL back in January. It was a shock for both of us because we thought it was just kidney failure which was bad enough. We later found out it was Amyloidosis AL confirmed by kidney and bone marrow biopsy’s. Reading about this disease scared me too the bone and I realized that a lot of the data I was reading was not recent and In some cases years old! Don’t make the same mistake I did, make sue you only read current data because you will be misled. What I found is this disease is very manageable when diagnosed early. Sherry lost her kidneys, but by the grace of god her heart was normal. Because of the time involved to get to that point you end up with a lot of time to worry and unfortunately be misinformed reading about the disease if not careful. My advice is that one family member do the research on the disease and inform the person affected and family members. It’s my opinion that because of all the misinformation on the net regarding this disease a lot of heart ache can be caused

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@bob100,
Thanks for sharing what you have learned through your own research. You are correct in advocating for patients to educate ourselves about our conditions. And searching the internet can be a wonderful source of information – as long as we go to reputable and respected sources, and are aware of outdated information.
I also encourage patients to take a loved one or a responsible individual withi them to appointments as an extra set of ears, and an additional voice.
Does xwife continue on dialysis? Does the AL diagnosis require any extra dialysis concerns/complications?

@rosemarya

@bob100,
Thanks for sharing what you have learned through your own research. You are correct in advocating for patients to educate ourselves about our conditions. And searching the internet can be a wonderful source of information – as long as we go to reputable and respected sources, and are aware of outdated information.
I also encourage patients to take a loved one or a responsible individual withi them to appointments as an extra set of ears, and an additional voice.
Does xwife continue on dialysis? Does the AL diagnosis require any extra dialysis concerns/complications?

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Thank you! Sherry was forgotten by the vascular doctor and as a result will not have the graft put in until the 27th of this month. It will take an additional 2 weeks to heal before they can use. Her kidney function is around 10% now and we have an appointment with her kidney doctor this Wednesday to find out what too do. It’s my understanding 10% is the bottom and dialysis is required. There are so many doctors involved with this disease that it’s hard to stay on top of them.

My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!

@evaxmas

My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!

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@evaxmas, welcome to Connect. You may notice I combined your discussion with an existing one titled, "diagnosed with AL amyloidosis, what can I expect?" I did this so you could meet a few of the other members who have posted about facing the diagnosis of amyloidosis. If you are responding by email you can click on VIEW & REPLY to see where your post is and to read through some of the other posts made by members on this similar topic. @evaxmas, is there a specific part of your mother's diagnosis that you would like the other members to comment on? You may also want to read through the following discussions on both AL amyloidosis and

Multiple Myeloma:
https://connect.mayoclinic.org/discussion/what-a-shocker/
https://connect.mayoclinic.org/discussion/treatment-for-amyloidosis-and-multiple-mylemoa/

@evaxmas

My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!

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I am sorry to hear about your mother and fully understand your concern and worry. I am not a doctor and what I know about the disease I have learned in the past four months. What you are asking for none of us are able to answer. I can tell you that a late diagnosis is not a good thing. One question I have is has your mother had an echocardiogram? If she has had one your cardiologist should be able too provide you with a prognosis. My wife has AL and the number one problem I have had is the lack of communication between all her doctors. If you do not educate yourself on this disease you are not able to understand a lot of what is being said. It has multiple implications and organ involvement any one of which could fail if not caught early enough. It also sounds like you may have already got your answer and I would suggest that you spread the love with not only mom but all your family, and know that god is watching over you. These are hard times for you and your family and they will need a strong loving person like yourself.

@bob100

Thank you! Sherry was forgotten by the vascular doctor and as a result will not have the graft put in until the 27th of this month. It will take an additional 2 weeks to heal before they can use. Her kidney function is around 10% now and we have an appointment with her kidney doctor this Wednesday to find out what too do. It’s my understanding 10% is the bottom and dialysis is required. There are so many doctors involved with this disease that it’s hard to stay on top of them.

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@bob100, That is frightful that the graft procedure was delayed. Unfortunately things like that do happen. When I was referred to be scheduled for my pretransplant evaluation at my local transplant center, the scheduler quit, and my paperwork sat on the empty desk until I finally called my head doctor, who made it happen. I sincerely hope that she will heal quickly so that she can begin dialysis. It sounds promising to hear that there are several doctors involved in this.

Here is a new discussion, that I want to share. Kidney & Bladder- Support for Dialysis Patients
https://connect.mayoclinic.org/discussion/support-for-dialysis-patients/

@evaxmas

My mother has been ill with a variety of issues that no one could figure out for the last 3 years. She has shortness of breathe abdominal pain severe abdominal swelling diarrhea and Constipation pins and needles with cramping of her hands swelling of her feet and ankles afib plural effusion swelling of her tongue trouble swallowing extreme weight loss fatigue weakness and loss of appetite. She has been hospitalized so many times in the last year and they kept getting closer and closer in time until finally a kidney dr was called in and had a 24 hr urine test done that tested her protein in her urine followed by a kidney biopsy. She was diagnosed with AL Amyloidosis with chf acute respiratory failure and a whole list of other issues. Consulted with an oncologist who said that my mother was too weak for her to ethically even consider any treatment option for her. Today she is getting a peg tube put in in hopes that we can assist her nutritional needs she is suffering from severe malnutrition. She is in a rehab and is very weak we are trying to strengthen her up she is on oxygen 24 hours a day. What is her her realistic prognosis since no one will give me a straight answer. I am putting her affairs in order and I am her caretaker and just want an honost answer as what I need to prepare for it feels like I am never going to be able to bring her home with even a drop of quality of life she has not even been even able to get the bone marrow biopsy to confirm if multiple Myeloma is the main cause which is what her drs feal that it is!!

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@evaxmas, I don't have any experience to share with you. I want to say that I am aware of how difficult it can be for the caregiver to handle the stress and uncertainty. Do you have others who are available to support you during this difficult time? I want you to know that there is a Caregivers Group on Mayo Connect. https://connect.mayoclinic.org/group/caregivers/

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